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Advance Directives: Planning for the End

24th August 2017

Larry Beresford

Larry Beresford is a freelance medical journalist in Oakland, CA, with a specialization in hospice, palliative, and end-of-life care | @larryberesford

La Crosse County, Wisconsin, population 118,212, is known as the advance directives capital of the world. It’s also the home of Respecting Choices, a hugely successful program that encourages people to talk about their wishes for end-of-life care with their families and with health care providers and then capture the results in a legal document.

Bernard “Bud” Hammes, a medical ethicist who helped to spearhead this county-wide initiative that made advance care planning a routine part of life for the La Crosse community and its health care system, wants to take the program national. Earlier this year the managers of Respecting Choices amicably separated from the Gundersen Health System, which incubated it and which continues to promote advance care planning locally. The independent organization then affiliated with the Coalition to Transform Advanced Care (CTAC), a Washington, D.C.,-based coalition of 140 organizations committed to improving health care for serious illnesses. Nationally, large-scale educational campaigns for advance care planning involve medical societies and associations, health plans, organizations like Aging with Dignity and the Conversation Project, philanthropic foundations, and even tech start-ups.

“Operating as a small, independent, not-for-profit business, we can be much more flexible in promoting our initiatives,” Hammes says. CTAC offers a national platform and contacts with other health care organizations and funders, but Respecting Choices’ national staff of 15 is still mostly based in La Crosse.

The Process of Planning

Experts have long held that the completed advance directive document, especially the living will, is not as important as the conversation to clarify values and preferences that generates it. Advance care planning is a process of thinking about, talking about and documenting the kinds of general care preferences and personal values that would be important to know in determining a person’s treatments in some future medical crisis—when the individual could not say what kind of care they wanted. These are emotionally laden subjects, but your family needs to hear and share what’s important to you. And the conversation is ongoing—not a one-time event—because people’s values, preferences and experience evolve over time. Advance directives, including living wills and Durable Power of Attorney for Health Care Decisions, are legal documents, slightly different from state to state, that try to capture those values, wishes and desires as well as naming who should speak for you when you can no longer speak for yourself.

Frequently, they are used to voice a desire for end-of-life care that is not overly burdensome, such as avoiding invasive high-tech treatments like cardio-pulmonary resuscitation, mechanical ventilators and feeding tubes at the point where these would only prolong the inevitable. But they can also be used to say the person would want everything done—no matter how grim their prospects.

The courts are clear: patients have the right to refuse medical treatments they don’t want. But in a crisis in the Emergency Room or ICU late at night when decisions need to be made right now, the medical juggernaut and its imperatives to do everything, regardless of benefit, are hard to resist.

When Conversation is Not Enough

“Even though many times people don’t have the document accessible at the time of crisis, the fact that they’ve even had the conversation with their loved ones has an impact. Not all of the time, certainly, but a lot of the time,” says Harriet Warshaw, executive director of the Conversation Project, a national non-profit co-founded by journalist Ellen Goodman to promote advance care planning conversations. “Hospital staff tell us that in the heat of the battle—in the midst of a medical crisis—they don’t look for the advance directive document. They look for the loved ones who have come to the hospital. Where people can get into trouble relative to treatments they might not have wanted is if they never had that conversation, or if their loved ones don’t agree.”

But for Hammes, a great conversation is not enough, nor is storing the advance directive in a place that’s easily accessible in a crisis—although that’s important, too. “The culture of the health care system needs to change to become more truly person-centered, rather than disease- and treatment-centered.” In order to achieve that person-centered system, a lot of things have to happen to embed cultural changes across the system and its various components, so the values and preferences of the individual have a fighting chance against the habits and convenience of the system, Hammes explains. “And that’s what happened in La Crosse.”

In 1991 Hammes was asked to lead a joint task force of the county’s two competing integrated health systems to look at the problem of patients’ values not being known in an end-of-life crisis. Too often, they would receive medical care that offered little benefit but a great amount of suffering, was not aligned with what patients would say was important to them, and would cause lasting moral distress for the caregivers at the bedside.

First the team looked at existing advance directives and then developed and tested its own models. It also surveyed the public about its experiences and attitudes. The Respecting Choices system they created included standardized materials that could be used across all local health care settings, with non-physician facilitators trained to guide patients and families through these difficult conversations to reach a written plan. Standardized policies were adopted for collecting, maintaining, accessing and utilizing these plans in the medical record.

Outcomes were impressive, achieving almost universal penetration for completed advance directives communitywide within the first few years. A follow-up study of 400 consecutive deaths in the county in 2007 and 2008 found that for 96 percent of the patients, a written advance directive capturing their preferences, values and goals was recorded and accessible in the medical record. For those with advance directives, decisions consistent with their wishes were honored by the health care system 98 percent of the time. “I just had cataract eye surgery, and I got asked three times about my advance directive,” Hammes says. “And yes, I have completed one.”

These numbers are vastly different than the rest of the country: an analysis of 150 studies just published in Health Affairs tells us that a third or fewer adult Americans have completed an advance directive, even though the majority say that they would want to have their wishes honored at the end of life. A car accident or stroke could land any of us in the hospital with no warning. But many people put off the conversation because they’d rather not be reminded of their mortality. They also fear that their preferences might change—although these documents can be updated as often as we can get them signed and witnessed.

Going National—and International

The newly independent Respecting Choices organization now offers an array of resources and tools, training, customized curriculums, and strategic thinking to help health systems in other communities implement an integrated strategy for organizational change. Typically this is done through a consulting contract lasting 18 to 36 months.

Respecting Choices projects are being implemented in 287 medical centers—ranging from an 80-bed rural hospital in upstate New York to the Kaiser Permanente HMO giant. Singapore, Australia and Germany have adopted the program, and Respecting Choices also works with state and regional conveners, the largest of which is a collaboration of hospitals and medical associations in the State of Washington.

“We still haven’t reached the tipping point,” Hammes says. “Respecting Choices has consistently focused on advance care planning as a process—but our real goal has to be transforming health care from an enterprise that treats disease to one that treats people who have a disease. We’re seeing that it isn’t enough to sit down and have a great conversation. You need a plan and it needs to be transmitted to clinicians in the future. And they need to honor it,” he says.

Hammes also thinks we should not be asking people to plan for what is not necessary at this point in their lives. As we get older, he says, it becomes possible to be more specific—especially once we’ve had some first-hand experience with what medical care can offer—or impose. And at that point the POLST form (physician orders for life-sustaining treatment), recognized in many states, can help to spell out that specificity. According to Hammes, “When I ask people what they would want done in those situations, they generally say that if they have lost the ability to know who they are, where they’re at, and who is with them, and if this is unlikely to be temporary, then whatever you call it, they would not want it.”